Dear Emma 1978
Hope you are well and have been able to get the appointments you were looking for and find a Clinician you are happy with . I am guessing by some of the posts you are in the US and i am always interested in the difference in treatment. You are right some clinicians 'go the extra mile', i think this can be said of any profession. However 'the extra mile' within the NHS relates to facilities, additional services, referral to trials etc which are often available in certain areas only.... All clinicians whether Doctors Nurses or Care Workers have to stick to protocol. Every NHS Trust have their own policies and procedures and ultimately all have to abide by NICE Guideleines as a minimum, they are not allowed to offer their own preference, NICE guidelines are determined by reseach. I will have a look at the sites you refer to as i am always interested in treatment / research.
Take Care Butterfly x
Hi Emma OOO ER, Were not qualified enough to recommend someone for another opinion. I'm new to this caner stuff only10 weeks, But you learn fast. A cancer center, I don't even no if we have such a thing. Lots of hospitals have oncology departments within them, some with better reputations than others. It sounds like you had a bad experience with your poor mum, that is obviously going to shake your trust. U could try ringing the number here, but here in the UK you need a doctors refferral following test results to be seen by a specialist, or at least a doctors refferal following persistant symptoms, you can't just rock up and get an appoinmtnet. I don't knjow if you would be able to get what your after from a reputable doctor, I'm sure there must be a service whereby doctors from one country talk to others, but not sure your gonna get far with your request.
Good luck anyway
Thank you all for the information.
As for belong, I am using it like I am using the forum or any other cancer related websites. To talk to people and acquire information. It is a community. It’s not a service. You can try it and see for yourself.
As for the extra mile, I have seen it first hand with my mom (lung cancer). Her oncologist told her there is nothing else to do while we had to go the extra mile as a family on our own and found that experimental drug that is mainly used for Melanoma but can be given to lung cancer patients with BRAF mutations under the definition “compassionate”. Some doctors may help their patients get to those solutions… and yet – our oncologist did not.
I am now seeking second opinion from a good cancer center… US or elsewhere. I am not familiar with cancer centers in the UK. Can you recommend a UK cancer center? Is there a service in the UK where I can get a second opinion based on my medical files without physical presence as I can not afford a trip.
Thank you all
Hi Emma, Its a difficult journey that we all travel, and we all have to get there by our own means, I'm lucky that my company provide their employees with private medical care, and yes I have used it as apart from anything else it allows another who dosnt have access to private medical care my place in the queue, but the doctors I see, my Breast Consultant an amazing and well respected woman in her profession also works within the NHS, and I've no doubt that her patients get the same care and attention that I do, also my plastic surgeon, again a consultant who lectures as well as practices, when I saw him there is part of my reconstructthat is not covered under the insurance, we know we have to cover the difference, he said "You dont have to pay you know, you could have this under NHS". Which I though pretty amazing, I have had a rocky road to my decision as to how to have my cancer removed, my breast consultant has asked me twice If I wanted to get a second opinion, it wasn't an issue for her, I didn't. They also have a weekly meeting called MDT whereby all the consultants meet and discuss their individual patients to make sure none of them are missing anything and they swop ideas to ensure we the patients get the best possible care and rounded treatment considering all the options. This forum and there are others too are a lifeline and a mass of infomation and support for us the terrified cancer diagnosed people, if your getting comfort from Belong then thats great, of course we challenge our doctors decisions, but ultimately we have faith and trust in them.
Good luck with your journey
Emma1978, I find you comment "Most doctors will not go the extra mile for all their patients for a small chance of helping one of them. So most of them are doing Zero effort to do anything that is not in the protocol." quite extraordinary; if that is how you feel, you are going find accepting their advice and treatment very difficult!
I will continue to put my trust in my doctors, rather that an 'App' any day of the week! I use this site for help and support. I do read as much as possible, knowledge is power, after all and I like to have an idea of what any treatment entails so I can have a well informed discussion with my doctors.
I take it you are in the US? Things in the medical world are very different over here in the UK of course. Our doctors are well trained but most work within our National Health Service, a service free to its patients at the point of delivery. They have a great many financial constraints to work within but the vast majority of them are hard working, dedicated and more than willing to go the extra mile and do the very best for their patients.
I wish you all the best for your future treatment and a successful outcome, but I have to say; your cynical attitude towards medical professions while preferring advice from god-knows-who on an app, is going to make a very difficult period of your life even tougher!
Thanks for the reply Emma.
In the UK most if not all the cancer forums are run or supported by registered charities.
I notice that Belong is currently recruiting IT staff as part of the business. Someone is paying their salaries. If they are a charitable / non profit organisation no doubt that would be made clear on the website.
I am sure Belong is very happy that you are advocating their app across cancer related forums and I am sure someone will find it as useful as you have.
All the best.
There is nothing really to explain. I am on Belong for a month now. Mostly chatting with patients and doctors. Like I do here and in other cancer forums.
I dont pay anything as there is nothing there to buy... and the app itself is free. So I dont really know how it gets funded. How do most of the cancer forums get funded ? I just use them if I see value.
Their website says "Belong was conceived out of the personal necessity of our team members while dealing with cancer...". I guess they are just doind something good.
Don't want to appear cynical, but Emma's post reads a bit like an advert.
The Belong website seems to be US based and comes with lots of disclaimers regarding any advice given via their 'community'.
They also collect users personal information to provide statistics that form part of the advice given.
It does not make clear if it is a charity or not for profit organisation or if the aim is to make a profit some how ( this concerns me)
Maybe Emma can explain how it works?
Hope this helps.
Hi Emma what did you actually Google for the belong site as I'd like to have a look at it. I'm grade 3 tnbc with node involvement. I had right mastectomy 9th October and have finished FEC chemo and start Docetaxel tomorrow (I'm dreading it ).when chemo is over I have to have node clearance and then 15 radiotherapy sessions. I'd really like to know if the clearance is necessary seeing as I had a clear ct scan 2 days before I started chemo.Im like you and feel I want to question everything and want to know the experts are doing all they can for me and not just follow a protocol .xxx
Thank you so much.
I consider myself very pragmatic. When I shop for a TV, I consult with people who knows somthing about TVs before I pick a brand and a model. Same goes for buying a car or a house. But when your life is on stake - why should we trust the first person we meet ? especially when we did not pick him/her. He/she was picked for us.
I dont think that blindly trust your oncologist is a smart move. in every medical school class there is the one who excel and the one who was more lazy and got the lowest grades. You dont know who is your oncologist. You must question them in every step of the way to make sure they make the right decesion for you.
I lost my mom to lung cancer.
Today, 3 years later I know for sure we could have done better. Just because the doctor followed the "Protocol". She was covered. she did things by the book.
My mom had a stage 4 lung cancer. there is a 95% chance the doctor would not see her in a 2 year period. Most doctors will not go the extra mile for all their patients for a small chance of helping one of them. So most of them are doing Zero effort to do anything that is not in the protocol.
I dont want to end up like this. Those who beat the statistics are those who challanged the system. and hell yeah I am going to challange it. Its my life after all.
Thats why I subscribe to all those sources... where I get tomorrows headlines... not the old news that my doctor knows by heart.
Thank you for your kindness 🙂
Hi Emma, sorry you are so concerned with the dilemma you're facing here, but everyone reacts so differently to chemo, I feel there has to be some degree of trial and error with everyone.
For example, I made a friend during chemo, we both started at the same time and were both given the same regimen of FEC-Taxotere. However by the time we got to Tax, she had a terrible allergic reaction whereas I was fine. Thus she was changed over to paclitaxol which I think is the same as the taxol you mention, and she was okay with this.
Cancer, unfortunately , is not an exact science, and I wish you all the best for your decision with your chemo, try and trust your oncologist as it's a minefield out there.
Love, Trudy xx
Hi. was diagnosed just recently.
Starting my Chemo treatment tomorrow. My physician wants me to take Taxol.
I have chatted with another doctor who said that Taxotere is also a common drug to be used. I went back to my doctor and she was very unhappy with the fact I talked to other doctors. But on the other hand - she told me that both drugs are fine and its a "trial and error" process where we need to find to which drug my tumors reacts better.
By the way - I didn't pay anything to the other doctor... I am on this app called BELONG for cancer patients. which is pretty cool.
Anyhow - I don't like the fact that its a "trial and error"... but seems like in many other cases its how things are. Starting with Chemo X... not responding ? OK. Lets go to Chemo Y... but time is the one resource I assume I don't have enough of...
How do you make a decision here ? How can I be sure my physician is doing the extra mile for me and not just following the protocol ?
Thank you all.